And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (18 page)

CDC Director Dr. Bill Foege had argued the need for new allocations for the CDC work on gay cancer directly with Assistant Secretary for Health Edward Brandt. Brandt agreed the research was important enough to warrant further funding. Sensitive to the rigid limits the administration was setting on all non-armaments spending, however, Brandt said he’d have to try to get the money from the heftier budget of the National Institutes of Health. After all, Jim Curran’s $833,800 request amounted to only one five-thousandth of the NIH annual budget. But no word came from the NIH.

Stepped-up surveillance and epidemiological studies were delayed. Any one of these studies might produce the smoking gun that could solve the epidemic, CDC officials worried, but they had to be put off.

Meanwhile, a preliminary review of the untabulated data showed one difference between the gay plague cases and the control cases—sexual activity. There was also a tendency among cases to use poppers and street drugs, but that was more a reflection of the high-paced life-style. The salience of sexual activity as a predicator of the diseases, of course, meant that it was sexually transmitted, task force members knew. And if this were the case, there was no reason to believe that it would not penetrate far deeper into the nation. Such suppositions, however, were based on cursory review. Without the case-control study, neatly analyzed, with all the scientific ratios that the general public doesn’t understand, the conclusions would never stand up in a court of science. To utter them publicly would threaten the CDC’s credibility.

Instead, the CDC could only issue bland assurances. Nobody need panic, they said; this would keep homophobes in check. There was no concrete evidence of contagion, they added; homosexuals could be reassured. It would always be the unwritten policy of health bureaucrats throughout the epidemic that, when in doubt, don’t scare the horses.

“It’s a combination of feline leukemia and hepatitis B,” Don Francis told his Harvard mentor, Dr. Myron “Max” Essex, in another one of his interminable phone conversations on the gay cancer.

From the start, Francis had thought that some infectious agent caused the underlying immune suppression that made gay cancer victims susceptible to all their ailments. The talk about the case-control study had convinced Francis that this was an even neater sexually transmitted disease than hepatitis. There was no other factor confusing the epidemiology.

Years of stamping out epidemics in the Third World had also instructed Francis on how to stop a new disease. You find the source of contagion, surround it, and make sure it doesn’t spread. The CDC needed to think about controlling this disease, he insisted. At the very least, blood banks should be put on the alert. If it spreads like hepatitis, he thought, it will certainly turn up in blood transfusions.

December 10

S
AN
F
RANCISCO

“I’m Bobbi Campbell and I have ‘gay cancer.’ Although I say that, I also want to say I’m the luckiest man in the world.”

With those words in the gay newspaper
The Sentinel,
a registered nurse became the first Kaposi’s sarcoma patient to go public with his plight and start what in San Francisco would be a long and difficult effort at awakening the gay community to the threat of the immune-deficiency diseases. Before last fall, Bobbi, a Tacoma native, had led a normal enough life in the gay Valhalla, enjoying bathhouses and nightlife even after settling down with his lover in the Castro neighborhood. In late September, after a day of hiking at Big Sur, he noticed some purple spots on his feet. He figured they were blood blisters and didn’t pay much attention until they got bigger. He went to see Dr. Marc Conant, who informed Bobbi Campbell that he had Kaposi’s sarcoma.

The major gay newspaper in New York, the
New York Native,
was crowded with stories about the new diseases, with detailed medical writing by a physician, Dr. Larry Mass. In San Francisco, however, the homosexual papers largely ignored the diseases, reprinting excerpts from Mass’s articles if they bothered to print anything at all. So Bobbi Campbell, the sixteenth diagnosed case of the gay diseases in San Francisco, decided to launch his own personal crusade to heighten awareness, proclaiming himself to be the “KS Poster Boy.”

“The purpose of the poster boy is to raise interest and money in a particular cause, and I do have aspirations of doing that regarding gay cancer,” he wrote. “I’m writing because I have a determination to live. You do too—don’t you?”

A longtime political crony of Cleve Jones called him off Castro Street to meet Bobbi Campbell in December. Cleve was always ready to be a bit late for work and dally over a drink, and he was curious about Bobbi’s
Sentinel
columns. Bobbi showed Cleve the lesions on his feet and told him about his plans to establish a support group for gay cancer patients. He also wanted to make sure the city provided adequate services. Cleve offered to help, though he wasn’t sure if there would ever be enough of these people to warrant their own program. Actually, it was the first time Cleve had ever met a gay cancer patient; it was the first time Cleve believed that this thing they were writing about in the
Chronicle
was real and not a figment of some demented headline writer’s imagination.

Within a few weeks, Bobbi had jawboned the corner drugstore in the heart of the Castro to put up posters about KS in its front windows. Bill Kraus lingered long in front of the drugstore, staring at the purplish splotches. He had considered the syndrome to be a New York phenomenon restricted to sleazy fist-fuckers. It undoubtedly was being hyped by a homophobic media, yet the lesion pictures made him very uneasy; the image dogged his memory. Not long after that he stopped going to the baths. He’d been on television so much in the past year or so, he was tired of being recognized all the time, he told himself, but in his deepest thoughts he also knew that his decision to drop the baths had something to do with that picture.

Larry Kramer would maintain that from the start, gay men knew precisely what they needed to do—and not do—to avoid contracting the deadly new syndrome. The problem, he insisted, was in how gay men reacted to this knowledge, not in getting the knowledge out itself. By late December 1981, Larry was embroiled in controversy over the outspoken role he had assumed in trying to alert New York gays to Kaposi’s sarcoma.

“Basically, Kramer is telling us that something we gay men are doing (drugs? kinky sex?) is causing Kaposi’s sarcoma,” wrote Robert Chesley, a Manhattan gay writer, in one of his several letters attacking Kramer in the
New York Native
. “…Being alarmist is dangerous. We’ve been told by such experts as there are that it’s wrong and too soon to make any assumptions about the cause of Kaposi’s sarcoma, but there’s another issue here. It is always instructive to look closely at emotionalism, for it so often has a hidden message which is the
real
secret of its appeal. I think the concealed meaning of Kramer’s emotionalism is the triumph of guilt: that gay men
deserve
to die for their promiscuity…Read anything by Kramer closely. I think you’ll find that the subtext is always: the wages of gay sin is death…. I am not downplaying the seriousness of Kaposi’s sarcoma. But something else is happening here, which is also serious: gay homophobia and anti-eroticism.”

After mulling the attack over with his therapist, Larry Kramer responded in kind, indelicately writing that Chesley was a spurned lover who was angry that Larry never wanted to date after their initial tryst. But most of Larry’s long response was more to the point.

“…Something we are doing is ticking off the timebomb that is causing the breakdown of immunity in certain bodies, and while it is true that we don’t know what it is specifically, isn’t it better to be cautious until various suspected causes have been discounted rather than reckless? An individual can choose to continue or cease smoking…but isn’t it stupid to rail against the very presentation of these warnings?

“I am not glorying in death. I am overwhelmed by it. The death of my friends. The death of whatever community there is here in New York. The death of any visible love.”

The point-counterpoint between Larry and his critics became such a regular feature in the letters column of the
Native
that one correspondent wrote to sarcastically deny rumors that “Bette Davis has been signed to play the role of Larry Kramer in the film version of ’Letters to the Editor.’ “

Meanwhile, Larry was despairing over the lack of any official attention to the epidemic. Half the victims lived in New York City, but Larry’s pleas to
The New York Times
for more coverage were unanswered. Even
The Village Voice,
which considered itself the arbiter of all things au courant in Manhattan, had so far failed to run a single story on the gay syndrome. When Larry called Mayor Ed Koch’s liaison to the gay community about getting some public health action, the aide assured Larry “I’ll get back to you tomorrow” and was never heard from again. Four months of fund-raising had netted only $11,806.

“Two new cases of KS are being diagnosed in New York each week. One new case is being diagnosed in the United States
each day.
Nothing is being done by the gay community to insist that the straight community, which controls all the purse strings and attention-getting devices, help us,” Larry wrote in one of his long
Native
diatribes. “If KS were a new form of cancer attacking straight people, it would be receiving constant media attention, and pressure from every side would be so great upon the cancer-funding institutions that research would be proceeding with great intensity.”

ABC S
TUDIOS
,
N
EW
Y
ORK
C
ITY

All the leg work, all the questionnaires, and all the brainstorming had yet to turn up any smoking gun as cause for this syndrome. Altogether, Jim Curran could be reasonably satisfied with the first six months of the CDC’s work on the epidemic. It had taken eighteen months between the first reported cases of toxic shock syndrome and the first
MMWR
report and still another month until the formation of a task force and the start of a case-control study. By comparison, it took only one month from Michael Gottlieb’s notification to the CDC about gay pneumonia until the first
MMWR
report and the establishment of the task force, and only three months to get going on the case-control study. The comparisons were less flattering when you got to the Legionnaire’s epidemic. During that outbreak, resources and personnel literally gushed from Atlanta, and by a comparable phase in the epidemic, scientists had broken the mystery by finding the responsible bacteria.

The difference, Curran knew, was media attention. Once toxic shock syndrome hit the front pages, the heat was on to find the answer. Within months of the first
MMWR
report, the task force had discovered the link between tampons and the malady. Back in 1976, the newspapers couldn’t print enough pictures of flag-draped coffins of dead American Legionnaires. However, the stories just weren’t coming on the gay syndrome.
The New York Times
had written only two stories on the epidemic, setting the tone for noncoverage nationally.
Time
and
Newsweek
were running their first major stories on the epidemic now, in late December 1981. There was only one reason for the lack of media interest, and everybody in the task force knew it: the victims were homosexuals. Editors were killing pieces, reporters told Curran, because they didn’t want stories about gays and all those distasteful sexual habits littering their newspapers.

In the cab on the way to the ABC studios, Curran ran over in his mind what he would tell the interviewers on “Good Morning America.” With funding stalled, Curran knew that national media coverage was essential to getting both attention and bucks to his research. Amazingly enough, this was the first time that the epidemic was making it on national network news.